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Thread: 8 Months Post-Op - still not better?

  1. #1
    Join Date
    Nov 2010
    Location
    St. Louis, MO
    Posts
    86

    8 Months Post-Op - still not better?

    I am not a little over 8 months post op and I still have daily pain in my low back, hips, and now even upper back. Is this normal? For those who have had fusions, do you remember how you felt at 8-9 months? Did you have new pains between 6-8 months? I am getting more discouraged as I thought things were supposed to improve not go the other direction. My next appt with surgeon isn't until Nov 16th. My PT basically just referred me to a massage therapist but even that's been increasing my discomfort for several days after the treatment. Any input, thoughts or advice are MUCH appreciated. I wish my back felt as good as my scar looks! I'm really hoping and praying that I don't just have to 'live with it'.
    Laurie Anne
    Age 30
    Pre-Op Curves T68, L80, Kyphosis 48 degrees
    Post-Op Curves both around 10 degrees
    Surgery with Dr. Lenke & Dr. Kelly 12/13/10
    Gained 2.5 inches now 5'9
    PRE-OP Photos: http://s1080.photobucket.com/albums/...urieScoliosis/
    5 Mos Post Op: http://s1080.photobucket.com/albums/...s%20Post%20Op/
    1-Year Post Op: http://s1080.photobucket.com/albums/...r%20Post%20Op/

  2. #2
    Join Date
    Jan 2006
    Location
    near Philadelphia
    Posts
    1,260
    I still felt fragile and in pain at one year post-op, and had dramatic improvement between 18 months and two years. I continued to improve between years 2 and 3 also. From what I've observed and experienced, lumbar fusions are a bit more difficult to recover from. Increasing activities, nerve regeneration and using new muscles all caused ongoing aches and pains for a long time for me.

    That being said, I would be concerned about steadily worsening pain at this point.

    Hope you feel better soon.
    Chris
    A/P fusion on June 19, 2007 at age 52; T10-L5
    Pre-op thoracolumbar curve: 70 degrees
    Post-op curve: 12 degrees
    Dr. Boachie-adjei, HSS, New York

  3. #3
    Join Date
    May 2008
    Location
    reno,nevada
    Posts
    3,959
    Laurie

    I was about 60-70% along at 8 months and was still healing. I started my PT at 9 months and I thought that the rotating arm bike was great for the paraspinal’s in the thoracic.

    If you look at my Redwood Park thread, I was about 10 months and was hiking about 2-3 miles at that point. In my picture in that thread, you can see the fatigue in my face....I was pushing through the pain which is something we have to do.

    Yes, new pains come as nerves and soft tissues heal. They sure do take a long time, a few years actually. I laid pretty low till I was 8 months along and then started to step up the hikes and walks. What other choice do we have? Unless you have pains that are “alarming” then just hold your head up, keep going, and keep your eye on the prize, because it does get better.

    Any new motions or stretches need do be done slowly.....discovering that soft tissue that has not been worked can be a surprise, even 2 years out. I believe that I have hit them all now at 3 1/2 yrs post.

    Hang in there
    Ed
    49 yr old male, now 60, the new 55...
    Pre surgery curves C12,T70,L70
    ALIF/PLIF T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  4. #4
    Join Date
    Oct 2008
    Location
    Orlando, FL
    Posts
    177
    Hey LaurieAnne!

    I've had a very smooth recovery, and over-all feel wonderful, even better than I did pre-op at 7 1/2 months post-op. But I still have plenty of days where I'm just plain exhausted, my nerve pain in my leg hurts more than other days, and feel achy all over. I can tell when I've over done something, like cooking (getting things in and out of the oven, or lugging laundry up and down the stairs), because I get that deep achy pain in my lower back.

    I still get itchy spots all over my back. It'll just flare up and then go away within a few hours. I also get occasional shooting pains for seemingly no reason at all. Nothing that has scared me yet, but they do hurt. I have to remind myself that my body has a WAYS to go still, and that my nerves are still healing. Nerves are the slowest healing parts of our bodies, so it's no wonder that at 7 months, I'm getting more "fireworks" than I did at 3 months.

    I have been seeing a massage therapist who deals with many scoli patients every other week since about 3 months post-op. Maybe your therapist needs to be more gentle? She barely puts any pressure on my back at all, but I still leave feeling sooo much looser. She does it deeper on my shoulders and legs, but my actual back she is VERY careful about. I also do my PT 3 times a week, and I feel better when I have been active...though, if I'm having a bad day I don't push through it always. Sometimes I think I just need to rest when my body says rest lol. When I don't have the energy for the exercises, I just take a walk.

    I hope you start feeling better soon!
    Rebecca
    Age: 28
    Dx w/ scoli @ age 12 S curves T-40* L-42*
    wore night bending brace as teenager
    Curves changed to 50's plus or minus
    herniated disc L2-3, Discectomy October 2007
    fusion L2-3 November 2008
    Revision L2-3 Fusion, Removal of hardware August 2009
    Curves measuring 52 T&L September 2010
    Fused T4-L4, all posterior December 27th 2010
    gained almost two inches in height

    Before and After Exterior
    Before and After X-rays
    My blog: http://herscoliosisjourney.blogspot.com/

  5. #5
    Join Date
    Jan 2011
    Posts
    122
    I am 9 1/1 months post op and I have terrible stinging pain where the crosslinks and screws are. I also have night sweats and sweats with certain movements during the day. I turn a certain way, or move a little one way, feel the stinging and burn up and get drenched in sweat. It sounds like nerves are usually the cause of most pain. I actually felt good/ better way back at 1 month post op. Probably because the nerves were still asleep.

  6. #6
    Join Date
    Sep 2003
    Location
    NJ
    Posts
    1,294

    Thumbs up recovery is looong!

    It was a good 18 months before I stopped needing some tylenol or aleve. You had a massive correction. The body needs to get used to being uncoiled.
    Original scoliosis surgery 1956 T-4 to L-2 ~100 degree thoracic (triple)curves at age 14. NO hardware-lost correction.
    Anterior/posterior revision T-4 to Sacrum in 2002, age 60, by Dr. Boachie-Adjei @Hospital for Special Surgery, NY = 50% correction

  7. #7
    Join Date
    May 2008
    Location
    Central NJ
    Posts
    1,956
    Quote Originally Posted by Karen Ocker View Post
    It was a good 18 months before I stopped needing some tylenol or aleve. You had a massive correction. The body needs to get used to being uncoiled.
    I think Karen's got a good point here--you were straightened significantly! Your whole body, bones, muscles, everything--have go get used to their new 'position' in life. I had problems with my hips for a few months too. It felt like the hip didn't fit into the socket right, which was something that I didn't have prior to surgery. I still have spasms periodically (knock on wood, not too often) in my upper back.

    Also, someone told me once that the move severe the correction (you are corrected to 10 degrees each?) that the longer the recovery will be.

    I'd check with your doctor, but also be patient with yourself.

    editing to add: I felt a mess or a while. Spasms all over my back, right shoulder frozen, left hip didn't fit right. I thought it would never get better. It did, and hopefully you will too.
    __________________________________________
    Debbe - 50 yrs old

    Milwalkee Brace 1976 - 79
    Told by Dr. my curve would never progress

    Surgery 10/15/08 in NYC by Dr. Michael Neuwirth
    Pre-Surgury Thorasic: 66 degrees
    Pre-Surgery Lumbar: 66 degrees

    Post-Surgery Thorasic: 34 degrees
    Post-Surgery Lumbar: 22 degrees

  8. #8
    Join Date
    Mar 2009
    Location
    Sacramento, CA area
    Posts
    189
    LaurieAnne,

    Just to add my 2 cents here. I agree with all the comments on this thread. I am at almost 11 months postop and still have daily aches and pains and phantom itching. Some days I'm exhausted from feeling so sore but the next day I will feel pretty good. Maybe the massage therapist can let up a little or try a different therapist? I hope you have some relief soon.
    Laurie
    Age 57
    Posterior fusion w/thoracoplasty T2-L3 Oct 1, 2010
    Thoracic curve corrected from 61* to 16*
    Lumbar curve, unknown measurement
    Disfiguring back hump GONE!!
    Dr Munish Gupta
    UC Davis Medical Center, Sacramento, CA

  9. #9
    backissues Guest
    I'm at 8 1/2 months post-op.

    Have you tried acupuncture??

    I had intercostal pain referring from T8 and T9 into my upper abdomen. Nothing helped except the acupuncture. I had shots and took pills. Now, I might get a little upper abdomen pain if I do too much but the frequency is minimal and the intensity very diminished. There was a time that I had to lay down to get rid of the pain because it put pressure on the nerve in my back.

    For the past month, I have done water therapy in warm pools (one is 88 degrees and one is 92 degrees). I think that has helped as well.

    For those of you who have followed my progress, my headaches from my occipital nerve seem to come from my posture when sitting at my desktop computer. When I was on vacation or away from the house overnight, I didn't get the headaches. On the other hand, the acupuncture and water therapy have been targeted to get rid of this as well. I'm trying to make my desktop area more ergonomic. I thought it was.

    Good luck!!

    Irene

  10. #10
    Join Date
    Oct 2010
    Location
    Bend, Oregon
    Posts
    265
    My days vary considerably, too. Most days are great, then for no reason that I can think of, I will have a day with spasms or tightness or just plain tenderness in a certain area. I still get a lot of annoying itchiness that no itching will relieve, with the back being numb around the scar. Overall, I get better, but still have days that are worse than the days before. Everyone already said it before me. There is so much going on with muscles and nerves after such major surgery. I like how Karen put it, being uncoiled! I'm sure you will be better as time goes by. That is what almost every fusion patient seems to experience. Two years is just such a long time to be patient!!!
    Last edited by jeneemohler; 08-23-2011 at 07:56 PM.
    Jenee'-52
    Bend, Oregon

    Braced 3 years in high school
    Lumbar 70'+ Thoracic 70'+
    I had 3" shrinkage in 6 months...

    Surgery Jan 10, 2011
    9 hours
    T3 to S1 with pelvic fixation
    Both curves now 35'

    Possible revison for Flatback Syndrome
    Non-fusion
    Loose/broken hardware-awaiting CT results

    Here is the link to my before and after pics..
    http://www.scoliosis.org/forum/showt......&highlight=

  11. #11
    Join Date
    Nov 2010
    Location
    St. Louis, MO
    Posts
    86
    Quote Originally Posted by leannebr View Post
    I am 9 1/1 months post op and I have terrible stinging pain where the crosslinks and screws are. I also have night sweats and sweats with certain movements during the day. I turn a certain way, or move a little one way, feel the stinging and burn up and get drenched in sweat. It sounds like nerves are usually the cause of most pain. I actually felt good/ better way back at 1 month post op. Probably because the nerves were still asleep.
    Hi Leannebr, I know what you mean about having felt better 1-2 months post op. Once I hit 3 months and started bending things got worse and I feel like they have deteriorated a little more since then. I get pretty constant pain in my lower right lumbar/sacrum area though I am not fused to my sacrum - fusion ends at L-4. The area also seems to have a bluehish hue for the last month or so that wasn't there before. I am also having a lot of pain and tenderness in the very center of my spine as well as upper spine (gee that's basically the whole thing). I have tried just about everything - physical therapy, massage therapy, walking a lot, not walking, water exercise, no water exercise, ice, heat, tylenol (no nsaids yet per my surgeon)...I just don't know what else to do. I may check into the accupuncture. Back bothers me from the time I get up in the morning until I can go back home to bed. I'm feeling like I don't have a life anymore...just overwhelming. I put a call into Dr Wednesday this week but didn't hear back yet. Hopefully Monday...I know they are busy. I just REALLY hope it is just muscles or something simple. I don't go back til November but at this rate it seems like that's an eternity. I just so much want to get back to doing the things I love and be without pain. Thanks for everyone's feedback. I will keep ya posted.
    Laurie Anne
    Age 30
    Pre-Op Curves T68, L80, Kyphosis 48 degrees
    Post-Op Curves both around 10 degrees
    Surgery with Dr. Lenke & Dr. Kelly 12/13/10
    Gained 2.5 inches now 5'9
    PRE-OP Photos: http://s1080.photobucket.com/albums/...urieScoliosis/
    5 Mos Post Op: http://s1080.photobucket.com/albums/...s%20Post%20Op/
    1-Year Post Op: http://s1080.photobucket.com/albums/...r%20Post%20Op/

  12. #12
    Join Date
    May 2009
    Posts
    3,745
    i am so very sorry that you are in pain, Laurie...
    your back looks so good in the photos...isn't it amazing how someone can look good and
    feel so awful...?! i used to get comments that i looked good when i was sick with Lyme
    disease...it rarely showed on the outside how bad i felt on the inside...so i know you must
    be hurting....
    it is stories like yours that have me stopped in my tracks with planning my own surgery...
    it just doesn't make sense why some do so well with this scoli surgery and some don't...

    i hope you find an answer soon...
    i am so sorry you are in pain...
    has your surgeon suggested a pain management doctor....
    would you try injections if they might help with the pain?
    pain doctors can do a lot more than just give out oral medication....
    sometimes there are shots that can help relieve pain, especially pain related to nerves....

    jess
    Last edited by jrnyc; 09-06-2011 at 12:12 AM.

  13. #13
    Join Date
    Jun 2011
    Location
    Southern CA
    Posts
    2,245
    I hate to say it but you sound a lot like me last year. I would call your surgeon and see if you can get in any earlier to see him. Something does not sound right

    Melissa
    Melissa

    Fused from C2 - sacrum 7/2011

    December 8, 2014 - Another Broken Rod Surgery

  14. #14
    Join Date
    Nov 2010
    Location
    St. Louis, MO
    Posts
    86
    Quote Originally Posted by mabeckoff View Post
    I hate to say it but you sound a lot like me last year. I would call your surgeon and see if you can get in any earlier to see him. Something does not sound right

    Melissa
    Hi Melissa,

    What happened to you last year? Were you having the same symptoms? What did they do to 'fix' it?

    Laurie
    Laurie Anne
    Age 30
    Pre-Op Curves T68, L80, Kyphosis 48 degrees
    Post-Op Curves both around 10 degrees
    Surgery with Dr. Lenke & Dr. Kelly 12/13/10
    Gained 2.5 inches now 5'9
    PRE-OP Photos: http://s1080.photobucket.com/albums/...urieScoliosis/
    5 Mos Post Op: http://s1080.photobucket.com/albums/...s%20Post%20Op/
    1-Year Post Op: http://s1080.photobucket.com/albums/...r%20Post%20Op/

  15. #15
    Join Date
    May 2005
    Location
    Wheeling, WV
    Posts
    1,105
    I'm chiming in also. Having had a rough recovery myself. I found it much easier to express the good points, I didn't want to be responsible for someone not having the corrective surgery. In hindsight that was a mistake!!! Karen has a great point, and to add to that,how many years did it take for your curvatures to reach those degrees??? Now, do you now know just how strong you really are? Sometimes our battles take a little longer than we would like, but victory is sweet. This may sound strange, but, the 5 years seemed like forever at the time, and now they sometimes seem like a blip on the screen.

    Winter still sucks,
    Shari

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